ADHERENCE TO TREATMENTThe patient’s perspective

2nd Pan-European Conference on Haemoglobinopathies

Berlin, 13-14 March 2010

Dr. Chris SotirelisUK Thalassaemia Society

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A chronic problem

Hippocrates once wrote that patients often lied about taking their medicine.

Adherence to medication was a big problem then, and still is today. Hippocrates of Cos

(ca. 460 BC – ca. 370 BC) Greek: Ἱπποκράτης

Hippocrates once wrote that patients often lied about taking their medicine.

Adherence to medication was a big problem then, and still is today.

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Terminology

Compliance1. conformity:

the state or act of conforming with or agreeing to do something.

e.g. “...in compliance with the court order”

( I better comply or else …………..)

2. readiness to comply readiness to conform or agree to do something.

Patient beliefs are not interacting in this process or are seen as an obstacle to treatment.

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Terminology - 2

Adherence 

1. The extent to which the patient continues the agreed-upon mode of treatment under limited supervision when faced with conflicting demands, as distinguished from compliance or maintenance.

2. the quality of clinging or being closely attached to a set regimen.

3. the process in which a person follows rules, guidelines, or standards, especially as a patient follows a prescription and recommendations for a regimen of care.

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What does it really mean ?

• Compliance Implies passivity, following demands and direction. Non compliants are seen as “rebels”, incompetent, or

nuisances. Non compliants are seen as challenging the “status quo” of

the doctor-patient relationship !! Patient acceptance is based on Doctors’ STATUS

• Adherence Implies an active role, a collaboration with the physician. States a self motivated decision to adhere to the advice. A tacit self regulation of illness and treatment. Patient acceptance is based on TRUST.

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Beyond Adherence....a new concept

• “two sets of contrasted but equally cogent health beliefs - that of the patient and that of the doctor. The task of the patient is to convey his or her health beliefs to the doctor; and of the doctor, to enable this to happen. The task of the doctor or other provider is to convey his or her health beliefs to the patient; and of the patient, to entertain these”.

• “The intention is to assist the patient to make as informed a choice as possible about the diagnosis and treatment, about benefit and risk and to take full part in a therapeutic alliance. Although reciprocal, this is an alliance in which the most important determinations are agreed to be those made by the patient”.

(Royal Pharmaceutical Society, UK, 1997).

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Beyond Adherence…...Concordance

does not refer to a patient's medicine-taking behaviourrefers to the nature of the interaction between clinician and patient. based on the notion that consultations between clinicians and patients are a negotiation between equals [1]. makes the distinction for how individual patients value the risks and benefits of a particular medicine may differ from the value assigned by their clinicians [2].

[1] Partnership in Medicine Taking: A Consultative Document. London: Royal Pharmaceutical Society of Great Britain and Merck Sharpe and Dohme; 1996 [2] Alaszewski A. A person-centred approach to communicating risk. PLoS Med. 2005;2:e41

Concordance is not synonymous with

compliance or adherence........

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Therein lies the conflict

“when the medicines that doctors prescribe fail to produce the benefit they expect, they often respond by varying the dose or selecting an alternative medicine. Thus doctors seem to behave as though non compliance is a problem for other doctors.”

“ the concerns of health professionals have focused almost exclusively on improving the quality of their own prescribing choices.”

“Practitioners are constantly urged to be both patient centred and evidence based. Yet these two goods can conflict”.

Marshall Marinker co chairJoanne Shaw director

Medicines Partnership Task Force, Medicines Partnership, Royal Pharmaceutical Society of Great Britain

BMJ 2003;326:348–9

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“Irreducible uncertainty”

• Patients with chronic conditions, like all healthcare professionals, use reasoning and judgment to make decisions. In doing so, they must grapple with irreducible uncertainty and its impact on their daily life.

• In managing uncertainty, the modes of reasoning by practitioners and health providers should encourage more good than harm. However, the medical providers only consider the short term costs and choose to ignore the long term effects and impacts on patients and society at large.

• The practitioner is the only buffer the patient has between science, providers and industry. This is the real privilege doctors have and their power and status derives from it.

They should value it AND use it wisely.

It’s the quality of the delivery of treatment that matters greatly.

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Irreducible uncertaintyExamples

Although treatment has been getting better, patients are still non compliant: Why?

• The Long Term still remains questionable I cannot rely on a Kaplan – Meyer curve to predict: My future lifespan My future career Having a family and children Having responsibilities I can’t cover Paying off my mortgage Seeing my children graduate Get a pension

Actually BOTH the K-M curve of my cohort as well as the Professor who diagnosed me and so many others got it VERY WRONG.

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Irreducible uncertaintyThe doctor’s part

• Doctor’s motivation should always be clear in seeking the optimum for their patients.

• Doctor’s scientific evidence should always be clear cut in favour of the patient interest.

• Doctors should never fail to be the buffer between health provider, science and industry.

• Doctors should NEVER “play safe” by unquestionably accepting guidance without forming an objective grounded personal opinion.

If not the result Is:

The Patient Is Exposed To Additional Risk or FUTILITY

So, why COMPLY IF ALL IS TRANSIENT

WILL I EVER BE ABLE TO “FINISH THE COURSE” ?

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How much is enough ?

Fertility treatmentEndocrinological treatmentAdditional specific complications

(ie. Infection protection etc.)Psychosocial issues

Thalassaemia Patients are asked to comply with all or a combination of many of the following treatments:

Each of the above requires multiple tests and appointments to see specialists.

CAN YOU IMAGINE LIVING A LIFE THAT IS PRIMARIILY AIMED AT GETTING TREATMENT ?

Blood transfusion Iron chelation HCV / Liver Disease treatment Bone disease treatment Diabetes Cardiological monitoring

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Patient centred services

• How many of the “Centres of Excellence” for Thalassaemia have :

After hours transfusions with proper staffing ? After hours clinics to see the doctors? After hours blood tests and cross matching ? Supportive staff to help with prescriptions, queries, emergencies, etc ? Can coordinate the various tests to minimize hospital visits ? Will respect my time ? Will respect my “normal life” priorities ?

And are willing to work WITH PATIENTS ?

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The alternatives

To this ? From this

on Disability / Income / Pension benefitsUnable to earn / contribute to society. Unable to contribute to my future and my family (.....if I have one !!)

Marginalised and seen as a burden

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Reasons of non adherence

Non adherence may be both : intentional or involuntary.

It may relate to : the quality of information given (delivery, clarity, evidence, source) the impact of the regimen on daily life, (burdensome, costly,

painful, its social impact) the physical or ental incapacity of patients, or their social isolation their ability to absorb more of the burden of uncertainty and

treatment. the patient’s Self Image and how it was acquired.

If the only treatment offered to the patient is predicated substantially by the practitioner’s views or if the only treatment to which the patient will agree falls substantially short of what modern medicine can achieve, the doctor may be left with a burden of responsibility that is hard to manage emotionally, ethically, and legally.

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How do you see your patient ?

About my clinical well-being (Hb, tests, infections, etc.) ? Do they prefer to keep everything on a clinical level ? Or the real burden in my life? Can YOU deal with the treatment YOU are giving ME ? Are you aware of what is ITS impact on MY life ? I have to, I can and I DO ! How can YOU help ? Does the fact I have a chronic condition change your

perception of ME as an INDIVIDUAL ?

When I walk into the clinic I get asked: “How have you been ?”

What does my doctor really want to hear ?

Be aware, most patients intuitively have the answers to these

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Strategies to encourage adherence

• Must not only address intra-psychic factors such as : knowledge of the regimen, belief in benefits of treatment, subjective norms, attitudes toward medication-taking behaviour

but also,environmental and social factors:

the interpersonal relationship between the provider and the patientsocial support from family members and friendsInnovation in reducing the burden of the condition and its therapy.

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Start with these first

• Respect my time as much as you expect me to respect yours

• Respect the priorities in my life

• Be as honest with me as you as you like me to be with you.

• Go out of your routine to help me keep mine

• Accept my good and bad days as I accept yours

• Respect my fears and uncertainties

• Share in the battles I have to face with me

• Be my ally and help me reduce the burden of the condition and the treatment.

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......and finally

QUESTION :

Why was he the first thalassaemic to run and finish the London Marathon ?

Time taken: 5 h & 55 min.

ANSWER:Because when he thought of the idea nobody told him “You can’t”,

but

“Sure, better start preparing for it NOW!”

(and he didn’t even give up his day job to do it!!!)

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Vielen Dank

I am a Patient.

Hath not a patient eyes? Hath not a patient hands, organs, dimensions, senses, affections, passions; fed with the same food, hurt with the same weapons, subject to the same diseases, heal'd by the same means, warm'd and cool'd by the same winter and summer, as any other person is?

If you prick us, do we not bleed? If you tickle us, do we not laugh? If you poison us, do we not die?

With thanks and apologies to W. ShakespeareThe Merchant of Venice 1596-1598

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Contacts

Thalassaemia International FederationPO Box 288072083 Nicosia

Cyprus

Tel:+ 357 22 319 129      + 357 22 319 129Fax: + 357 22 314 552

Email: thalassaemia@cytanet.com.cy http://www.thalassaemia.org.cy/contact.html